Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.

Hmmm... by usual measures your iron saturation is low. This indicates that while your ferritin ordinarily would be considered okay, it is likely artificially elevated. Likely that means that your ferritin is definitely on the low side for somebody with RLS. If you haven't had any iron infusions, perhaps you can get one. Different Laboratories do use different normal ranges for these numbers so it would be helpful if you would post what the normal ranges for these used by the laboratory that did the analysis.

stjohnh wrote:Hmmm... by usual measures your iron saturation is low. This indicates that while your ferritin ordinarily would be considered okay, it is likely artificially elevated. Likely that means that your ferritin is definitely on the low side for somebody with RLS. If you haven't had any iron infusions, perhaps you can get one. Different Laboratories do use different normal ranges for these numbers so it would be helpful if you would post what the normal ranges for these used by the laboratory that did the analysis.

Hi stjohn

thanks for the opinion! I had an Iv iron done April 2016 when ferritin was about 50 (after 3 months of oral iron) and am supposed to meet with my doc soon to decide if I want another IV or to go with oral iron. my doc is ok to trial IV iron again on condition that if my symptoms don't improve then he would like me to increase my ropinirole. But the numbers are "technically" borderline lowish so I guess we are in no man's land....hence the hunting around for some thoughts/opinions from others

Well, for most people getting their iron level up with oral iron is at least a time-consuming and sometimes difficult due to stomach problems. Most people on these boards that want to have an IV iron Infusion have difficulty persuading their doctor to do it. Seeing as how your doctor seems agreeable, I think under the circumstances I would request the IV Iron Infusion.

stjohnh wrote:Well, for most people getting their iron level up with oral iron is at least a time-consuming and sometimes difficult due to stomach problems. Most people on these boards that want to have an IV iron Infusion have difficulty persuading their doctor to do it. Seeing as how your doctor seems agreeable, I think under the circumstances I would request the IV Iron Infusion.

peanut1 wrote:Thank you! I have a lot of hope for managing these symptoms better IF I can get the transfusion.

peanut1: did you get your infusion eventually? I hope you did because I had a positive experience with mine when I did it.

I am now 3 weeks into my 2nd infusion and I didn't remember having such a dramatic effect from my 1st. But within 3 weeks the physical fatigue that has been bugging me for the last 6 months, with Aug - Sept being the worst, I'm no longer tired. My RLS symptoms has reduced signficantly - I no longer experience pain, although the discomfort is present. I still fidget (which is a problem for work). But the lack of pain and improvement in energy levels has been quite amazing. Unfortunately, it didn't help very much with sleep, so my doc is pushing for me to restart ropinirole at 0.25mg, which I have caved in because I need to return to work soon.... although ideally I would prefer to wait it out for 6 weeks.

stjohnh wrote:Hmmm... by usual measures your iron saturation is low. This indicates that while your ferritin ordinarily would be considered okay, it is likely artificially elevated. Likely that means that your ferritin is definitely on the low side for somebody with RLS. If you haven't had any iron infusions, perhaps you can get one. Different Laboratories do use different normal ranges for these numbers so it would be helpful if you would post what the normal ranges for these used by the laboratory that did the analysis.

Hi stjohn,

I'm going to need an opinion on the iron again. I did take up the IV iron by using the low iron saturation to push for it. my doc was slightly hesistant initially about the IV iron because the ferritin is > 100

i have a problem though that might need advice from you or others on the forum - my neuro is now refusing to measure the iron saturation, as advised by the hatemalogist because my blood is prone to being lysed. He is only going to measure ferritin and ESR from now on. But I am feeling much better after the IV iron - both in terms of the symptoms and the fatigue, but the feritin was at 111 before the IV iron and the hatemalogist insisted that my feritin was not artifically elevated because the ESR was within the normal range.

I'm now rather concerned that perhaps I do need the ferritin at a slightly higher level but neuro might refuse to give me one as long as ferritin > 100.

are there any other iron indices that will be helpful other than ferritin? or am I just stuck given that they are not going to measure the low iron saturation

are there any other iron indices that will be helpful other than ferritin? or am I just stuck given that they are not going to measure the low iron saturation

There are several tests of iron status, however the real problem is not so much the tests that are available, but that the relationship between various iron measures and RLS symptoms is unknown except for ferritin, and even then serum ferritin doesn't correlate terribly well with RLS symptoms. The iron problem that RLS patients have is poorly understood and the serum ferritin, which is the usual measure, is not well correlated with iron levels in the brain. On this forum we ordinarily say that a ferritin needs to be over a hundred for a person to have an adequate ferritin level as far as RLS is concerned, however it is known that some people require ferritin levels significantly higher than that to get relief. Additionally, many don't get any relief from extra iron no matter what their ferritin is. The reason for that is unknown (at least to me).

are there any other iron indices that will be helpful other than ferritin? or am I just stuck given that they are not going to measure the low iron saturation

There are several tests of iron status, however the real problem is not so much the tests that are available, but that the relationship between various iron measures and RLS symptoms is unknown except for ferritin, and even then serum ferritin doesn't correlate terribly well with RLS symptoms. The iron problem that RLS patients have is poorly understood and the serum ferritin, which is the usual measure, is not well correlated with iron levels in the brain. On this forum we ordinarily say that a ferritin needs to be over a hundred for a person to have an adequate ferritin level as far as RLS is concerned, however it is known that some people require ferritin levels significantly higher than that to get relief. Additionally, many don't get any relief from extra iron no matter what their ferritin is. The reason for that is unknown (at least to me).

Indeed! I need mine closer to 200. And some people get to 300 and still have no relief. One reason may be a missing protein - Steve has written about that - he does not have it. But even with that, there is still a lot of variability.

Indeed! I need mine closer to 200. And some people get to 300 and still have no relief. One reason may be a missing protein - Steve has written about that - he does not have it. But even with that, there is still a lot of variability.

Thanks Ann! I just saw my neurologist who saw the improvement after the IV iron so he does agree that maybe I need it at a higher level than 100. He is finally convinced now after reading all the articles I sent him! He apparently showed my iron test results to a number of hatemalogist who just said my iron blood test results dont make sense!

Indeed! I need mine closer to 200. And some people get to 300 and still have no relief. One reason may be a missing protein - Steve has written about that - he does not have it. But even with that, there is still a lot of variability.

Thanks Ann! I just saw my neurologist who saw the improvement after the IV iron so he does agree that maybe I need it at a higher level than 100. He is finally convinced now after reading all the articles I sent him! He apparently showed my iron test results to a number of hatemalogist who just said my iron blood test results dont make sense!

ViewsAskew wrote:Indeed! I need mine closer to 200. And some people get to 300 and still have no relief. One reason may be a missing protein - Steve has written about that - he does not have it. But even with that, there is still a lot of variability.

Thanks Ann! I just saw my neurologist who saw the improvement after the IV iron so he does agree that maybe I need it at a higher level than 100. He is finally convinced now after reading all the articles I sent him! He apparently showed my iron test results to a number of hatemalogist who just said my iron blood test results dont make sense!

It makes clear that the sort of infusion you have, for example, Iron Sucrose versus Ferric Carboxymaltose, will make a big difference to eventual uptake in the brain.Repeat infusions are considered when symptoms worsen and when serum ferritin levels drop below a certain level, quite a high level it seems.That will be different for each patient and each infusion type. So, no hard and fast rule. But you certainly see your doc when everything goes pear-shaped and you're plastered on the kitchen ceiling at two in the morning.